Today is Rare Disease Day
Today is Rare Disease Day, a day of recognition aimed at raising awareness of rare diseases and reinforcing their status as a public health priority. This year’s theme is research, a key element in finding a cure for rare diseases around the world.
Eddie and Jill Vedder are co-founders of the EB Research Partnership, an organization dedicated to funding research aimed at treating, and ultimately curing, Epidermolysis Bullosa (EB).
Individuals with EB lack a critical protein that binds the layers of skin together. Without this protein, the skin tears apart, blisters and sheers off, leading to severe pain, disfigurement, and wounds that never heal. There is currently no cure.
You can support finding a cure for EB by:
1. Making a contribution to EB Research Partnership
2. Show how you #JoinHandsForEB by posting a photo to social media using the hashtag, and tagging @Pearl Jam and @EBResearch
Mikey's Story
These
are Mikey’s hands. Each day, this brave little boy faces unimaginable
pain as his skin blisters and tears at the slightest touch. Kids like
Mikey are lucky to make it to their 30th birthdays. The work being done
at EB Research Partnership is going to change that. They put every
dollar towards innovation in technology and research, bringing together
the most brilliant minds to make progress for kids and their families
suffering from this horrible disease.
Comments
I couldn't even imagine to deal with it.